GP practice guide: supporting disabled children and young people

GP practice guide: supporting
disabled children and young people
Information for Health Professionals
1
Introduction
This guide has been written for GPs and clinical
commissioning groups to increase their understanding of the
specialist services that disabled children access. This guide will
also assist GPs to coordinate care for disabled children, young
people and their families.
It includes sections on:
•the health professionals who work with disabled children and
young people and the specialised services they access
•why early identification of and intervention for developmental
delay is important
•issues that disabled children frequently present with, who
can support them and patient information that GPs can
provide to families.
Families with disabled children can face a complex web
of interdependent systems and pressures, leading to what
families often describe as a ‘constant battle for services’ and
feeling unable to cope. People providing high levels of care,
such as parents of disabled children, are twice as likely to
suffer from poor health as those without caring responsibilities.
2 GP practice guide: supporting disabled children and young people
Recent reviews found major problems in the provision of
health services for disabled children.
‘Children with disabilities or those in situations that make them
vulnerable, do not always get the attention and care from
healthcare services that they need.’
Healthcare Commission 2008
‘Despite the high number of children coming into their
surgeries, many GPs have little or no experience of paediatrics
as part of their professional training. This means that, technical
competence notwithstanding, many GPs lack the confidence
to assess and treat children effectively.’
Sir Ian Kennedy 2010, Getting it right for children and
young people
GPs are often the first port of call when families experience
illness or disability. Carers say getting early advice and
information from their GP can transform their experiences of
caring by allowing them to access support from the outset.
Parents of disabled children were asked how GP care could
be improved.
‘66% want GPs to have a better understanding of their
child’s condition, 61% want better support for parent carers
and the wider family from GPs. 62% want to see improved
joint working of GPs with other professionals’
Contact a Family 2011, Report into the extent of GPs
involvement in disabled children's care
GP practice guide: supporting disabled children and young people
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Contents
Introduction.................................................................................................. .........
2
Services accessed by disabled children........ .............................................
5
Child development teams........................................................................... 5
Specialist nurses.............................................................................................. 6
Community, secondary and tertiary services........................................ 7
Coordination of care and key working.................................................... 9
Developmental Delay....................................................................................... 10
Why early identification and therapeutic intervention is important.. 11
Commonly presenting issues......................................................................... 12
Feeding and eating........................................................................................ 13
Speech and communication...................................................................... 14
Movement and coordination...................................................................... 15
Learning............................................................................................................. 16
Dental care........................................................................................................ 17
Toilet training and continence.................................................................... 18
Behaviour.......................................................................................................... 19
Sleep................................................................................................................... 22
About Contact a Family.................................................................................... 24
How Contact a Family can help GPs........................................................... 24
44 GP practice guide: supporting disabled children and young people
Services accessed by Disabled Children
Child development teams
Child development teams are led
by paediatricians working closely
with physiotherapists, occupational
therapists and speech and language
therapists to assess and review a
child’s needs and devise treatment
programmes to encourage and support
their development. They also require
input from psychologists, either as
part of the team or from the Child and
Adolescent Mental Health Services
(CAMHS). The paediatrician leads
and liaises with other services from
community, acute and tertiary settings
involved in the child’s care.
equipment and a dietician to provide
advice on food the child can manage
to swallow and make sure they are
receiving sufficient nutrition.
This is why disabled children benefit
from the involvement of a multidisciplinary team working as a ‘team
around the child’. They can carry out
joint assessments and work together
to consider all the different areas
of development the child needs
support for, agree priorities and devise
treatment programmes to best meet
the needs of the individual child and
their family.
Disabled children often need
assistance from all of these
practitioners to support more than
one area of their development. For
example, to help the child to self-feed
the child might need input from a
speech and language therapist to
help with safe eating, drinking and
swallowing, a physiotherapist to devise
exercises for the child to develop
movements to assist with feeding
themselves and advise on the best
sitting position, an occupational
therapist to provide advice on seating,
‘Disabled children and young people receive child-centred multi-agency
co-ordinated services from the point of referral through identification and
assessment to delivery.’
National Services Framework for Children and Young People
Standard 8: for Disabled Children and those with Complex Health
Needs
GP practice guide: supporting disabled children and young people
55
Specialist nurses
Health visitors have an important role,
working in partnership with other early
years staff, to raise awareness and
understanding of children’s health and
development needs and encouraging
referral to other services if they or the
parents are concerned about a child’s
development.
Health visitors can also provide additional
care programmes related to the child’s
disability or to address issues which
can arise in any family but are more
likely where a child has special needs –
maternal, parental mental health,
feeding, weaning, toilet training, play etc.
Having a specialist health visitor for
children with disabilities in the area
is particularly useful for supporting
families, training generic health visitors
and coordinating the Early Support
programme, Common Assessment
Framework and local integrated pathways.
Community children’s nurses
play a pivotal role in supporting
disabled children at home and within
community settings. This includes
technology dependency such as
tube feeding and gastrostomy care.
They also play an important role in
making sure a child’s health needs are
supported safely in nursery or school.
Learning disability nurses help
parents develop skills to support their
child’s development. They can also be
invaluable in providing advice to GP
practices and local hospitals on working
with children with learning disabilities,
and what reasonable adjustments
are needed to make services more
accessible and less stressful for people
with learning disabilities.
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Community, secondary
and tertiary services
The care for disabled children can
involve several healthcare disciplines
(at primary, secondary and tertiary level
involvement) and other agencies (see
diagram overleaf).
When a large number of professionals
are seeing a child, there is increased
risk of fragmentation of care. It is
important for professionals to keep
detailed, up to date records during
each contact with a child and promote
accurate sharing of information
between professionals. Of particular
importance is information sharing with
the GP, where a child’s medical record
is kept.
Palliative care
Palliative care is not just for end of life.
It should be offered as soon as there is
a diagnosis of a life-limiting condition
or recognition that curative treatment
for a life-threatening condition is not an
option. It embraces physical, emotional,
social and spiritual elements and
focuses on the enhancement of quality
of life for the child or young person
and support for the whole family.
‘Families of disabled children have contact with an average of 10
different professionals’
‘Disabled children often attend the same hospital two or three times in
the same week; this can affect the family‘s wider health needs and be
disruptive to family, school and working life’
National Service Framework for Children and Young People
Standard 8: for Disabled Children and those with Complex Health
Needs
GP practice guide: supporting disabled children and young people
7
Vision –
Orthoptist ,
optometrist,
ophthalmologist
Hearing –
Audiology/
ENT
Dietician
Education –
Special Educational Needs
Coordinator (SENCO),
educational psychologist ,
portage, sensory support
services, specialist
support services, early
years inclusion teams
Communication
& language
Feeding &
eating
Teeth
key working helps
coordinate services
for the family
Posture, movement,
balance and coordination
Podiatry &
Orthotics
Wheelchair &
Equipment
Community Learning
Disability Team
CAMHS – Psychiatrist,
Clinical Psychologist,
specialist nurses
GP Practice – often the
first port of call, refers
child to other services,
maintains child’s medical
record, supports whole
family
Learning/
thinking
Behaviour
Sleep
Continence
service
Palliative Care
through out the
child's life
Social Care – Short
Breaks, housing
adaptations, financial
support and benefits
Acute Services
Toilet training
& continence
Child Development Team
Paediatrician
Specialist nurse
Child
&
Physiotherapist
family
Speech and
Language Therapist
Occupational Therapist
Personal care,
dressing, washing,
handling
The Child Development team
support children with additional
needs through a multi-disciplinary
team which works together and
liaises with other services.
Community
Dentist
Genetics
Diagnostics &
counselling
Nurses – Health visitors,
community nurse, school
nurse
Specialised paediatric
services e.g. neurology,
cardiology, orthopaedic
surgery
GP practice guide: supporting disabled children and young people
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Coordination of care and
key working
Families of children who are seen by
a large number of professionals will
require a key worker to:
• act as a single point of contact for
the family
• coordinate the delivery of services
from all agencies involved in the
care and support of the child and
family
• ensure the family has access to
appropriate services.
Key working support may come from
health, social care, education or the
voluntary or private sector. General
practice teams might be able to offer
key working to some families but where
there are complex needs, arrangements
would need to be made through a GP
referral and multi-disciplinary needs
assessment and discussion.
For more information about key working,
and how it improves outcomes see
http://ncb.org.uk/early-support/
key-working
‘Parents of severely disabled children or those with high levels of need
require a single point of contact with services and an effective, trusted
and informed named person (a 'key worker' or Care Manager) to help
them obtain the services they require.’
‘Studies of key workers consistently report positive effects on relationships
with services, fewer unmet needs and greater family well-being.’
National Service Framework for Children and Young People
Standard 8: for Disabled Children and those with Complex
Health Needs
GP practice guide: supporting disabled children and young people
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Developmental Delay
Some children are diagnosed shortly
after birth as having a condition likely
to cause developmental delay. For
example, Down’s syndrome and
other genetic disorders may present
in infancy with feeding problems or
low muscle tone. For others, the first
indication that the child has additional
needs may be picked up at their
8 week, 2½ year and pre-school
developmental checks.
This can be a very worrying and
difficult time for parents looking for
answers and explanations. The term
‘developmental delay’ can lead parents
to expect their children to catch up
with their development later. This will
be true for some children but not for
others. Communicating this to parents
requires careful and sensitive handling.
When considering whether a child’s
development is delayed, it is useful
to ask a parent how they feel their
child is developing compared to
other children of the same age.
This will help to get an idea of their
concerns and start to piece together
an overall picture of the child and
their development.
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The four main areas of learning and
development are:
Personal, Social and Emotional –
such as copying facial expressions,
responding to what parents say,
becoming a conversational partner,
forming close attachments, playing with
others, showing affection and concern
for others, learning to wait or take turns.
Communication and Language –
such as smiling, listening, responding
to words, pointing to objects, talking,
reading and writing and expressing
needs, thoughts and feelings.
Physical – such as holding and
handling objects, sitting up, crawling,
walking, using the toilet, dressing
themselves, and becoming agile and
exploratory.
Cognition – such as showing interest
in toys, engaging in pretend play,
completing simple puzzles, drawing
people with a head and some features.
When there are concerns about a
child’s development, GPs and health
visitors are often the parents first point
of contact.
Why early identification
and therapeutic
intervention is important
Therapists play an important part in
assessing a child with developmental
delay and identifying approaches that
will promote development. These
can be most effective in the first few
years while the brain is still developing.
For this reason, therapists like to see
children when developmental delay is
first suspected or diagnosed.
Children with developmental delay
can benefit from expert input well
before they go to school. These early
interventions maximise the chance of
the child achieving their best by the
time they reach school and growing up
being able to be more independent
and have a better quality of life.
Children and young people with
developmental delay may benefit from
the involvement of a multi-disciplinary
team such as a child development
team, who can carry out joint
assessments and work together to
devise treatment programmes to best
meet the needs of the individual child
and their family.
GP practice guide: supporting disabled children and young people
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11
Commonly presenting issues
This section provides information about
issues disabled children might present
with in primary care. It explains the
roles of different health professionals
who may be able to help and provides
details of patient information for GPs to
give to parents.
It has sections on:
• feeding and eating
• speech and communication • movement and coordination
•learning
• dental care
• toilet training and continence
•behaviour
• sleep. ‘Interventions support optimal
physical, cognitive and social
development are provided as
early as possible with minimum
waiting times.’
‘Assessments include parents'
needs for support with caring
for a child with, for example,
sleep, behavioural or emotional
problems, breathing difficulties
or fits.’
National Service Framework
for Children and Young People
Standard 8: for Disabled
Children and those with
Complex Health Needs
Disabled children are likely to require
support in many if not all of these areas.
Each section describes the roles
different health professionals can take
in providing support on each issue. This
might vary across different local areas.
Some children will only require input
on a few of these issues from one
or two health professionals. Children
with more complex needs will require
input from a multi-discipline team of
health professionals on most if not all
of these. Having a multi-disciplinary
team approach is more cost effective,
reduces the number of appointments
a family needs and provides a more
holistic, integrated service.
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Feeding and eating
Children with neuromuscular
conditions can find it difficult to chew
and swallow food.
Children with learning disability or
autism spectrum disorders (ASDs)
can have difficulties that may relate
to overeating, under eating or being
very selective about what they will
eat. Supporting these issues can
require input from a number of health
professionals working together.
Speech and language therapist
provides help where there are physical
issues with eating, drinking and safe
swallowing.
Dietician can provide advice on food,
diet and nutrition.
Physiotherapist can devise programs
to encourage appropriate movements
and advise on the best sitting position
for feeding/eating.
Occupational therapist can help by
providing advice on equipment and
aids to assist with feeding/eating. They
can also advise parents on strategies
for managing meal times.
Community nursing team is needed
to support families whose child
requires tube feeding.
Clinical psychologist or psychiatrists
might be needed to help implement
cognitive and behaviour strategies for
children with behavioural issues around
feeding/eating.
Parent information
Contact a Family Parent Guide:
www.cafamily.org.uk/parent-guidefeeding-eating
Scope: Food Talks – Practical tips to
include children with eating difficulties:
www.scope.org.uk
National Autistic Society: Dietary
management for children and
adolescents with ASDs: restricted diet:
www.autism.org.uk
GP practice guide: supporting disabled children and young people
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Speech and
communication
A child might be delayed in responding
to sounds, simple requests or beginning
to talk compared to the typically
developing child. Supporting this can
require input from a number of health
professionals working together.
Audiologists have special tests to
measure the hearing of children who
cannot respond consistently to sound.
The audiologist can work with other
specialists to improve the child’s hearing
and arrange for hearing aids to be fitted.
Speech and language therapists can
work with parents to develop
communication skills. If a child cannot
talk they can help them explore
other ways to communicate such as
Makaton signing.
Physiotherapists can provide advice
around supporting the child to be
able to sit upright so they have more
frequent face contact with their parents.
Occupational therapists can provide
advice on aids to support sitting upright.
Portage is a pre-school education
home visiting service that works with
families of children with additional
needs. They help the family
support the child’s development
of communication and pre-school
learning skills.
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Parent information
Royal College of Speech and
Language Therapists: Help your child
to talk:
www.rcslt.org
Early Support Information for parents:
Speech, language and communication
needs:
www.ncb.org.uk/early-support/
resources
Afasic helps children with speech,
language and communication
impairments. They have a range of
printed information for parents:
www.afasicengland.org.uk/parents
Makaton is a language programme using
signs and symbols to help people to
communicate:
www.makaton.org
GP practice guide: supporting disabled children and young people
Movement and
Coordination
A child may find it difficult to learn to
sit, walk and develop fine motor skills.
This may be due to loss of movement,
sensation, balance or co-ordination.
Supporting this can require input from
a number of health professionals
working together.
Physiotherapists can provide advice
and/or treatment designed to enable
children to achieve their own level of
functional motor skills. They develop
programmes which become part of the
child’s daily activities and parents and/
or education professionals are shown
the best way to assist their child during
day to day care and play.
Occupational therapists can assess
children in all areas of development
including hand eye coordination.
They can advise on toys and games
to encourage the development of
the child’s motor skills. They can
also advise on equipment to help
mobility, like tricycles and trolleys, and
equipment and aids that could help the
child with everyday activities, like eating.
Podiatry or orthotic services provide
orthopaedic soles and splints when
needed.
Wheelchair and equipment services
may be needed to support the child in
home and at school. Wheelchairs need
regular reviewing to monitor the child’s
growth and make sure it is providing
good postural support. Poorly fitting
wheelchairs not only cause pain and
discomfort but can also cause other
medical problems to develop.
Parent information
Chartered Society of Physiotherapy –
How can physiotherapy help with
cerebral palsy?
www.csp.org.uk/your-health/
conditions/cerebral-palsy
Contact a Family Parent Guide: Aids,
equipment and adaptations:
www.cafamily.org.uk/parent-guide-aidsequipment-adaptations
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GP practice guide: supporting disabled children and young people 15
Learning
Children with learning disabilities find it
harder than others to learn, understand
or communicate. A learning disability
can be mild, moderate or severe.
Supporting this can require input from
a number of health professionals
working together.
Paediatricians assess the child’s
learning disability and/or monitor their
health and progress.
Learning disability nurses work with
children and adults with a learning
disability and their families.
Clinical psychologists help children
with specific problems, learning
new skills and help them overcome
behavioural difficulties.
Educational psychologists assess the
child’s learning disability and provide
advice to parents and education staff
on appropriate interventions to support
learning and improve behavior.
Portage is a home visiting educational
service for pre-school children and their
families who need extra support.
Special Educational Needs
Coordinators (SENCOs) are teachers
in schools or members of staff in
an early education setting who have
responsibility for coordinating SEN
provision within that establishment.
Provision is always additional or
different provision to that provided
for other children of the same age.
The SENCOs role is found in England,
Wales and Northern Ireland.
Parent Information
Royal College of Psychiatrists: learning
disability:
www.rcpsych.ac.uk
Early Support: does your child have a
learning disability?
www.ncb.org.uk/early-support/
resources/publications
Speech and language therapists
offer support and advice to parents
of children with any type of
communication problem and help
children develop their communication,
language and speech. They also
provide advice and appropriate
programmes of intervention for
education staff working with the child.
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GP practice guide: supporting disabled children and young people
Dental Care
Maintaining oral hygiene and dental
health in disabled children can be
challenging, leaving these children more
at risk of suffering from dental conditions.
Children with learning disabilities
or autism can find being examined
by a dentist frightening and some
will not tolerate treatment. Children
with a physical disability can find it
difficult to brush their teeth or access
a dental surgery. Children with certain
genetic conditions are more prone to
misaligned or differently positioned
teeth because of their cranio-facial
structure. Dental hygiene is particularly
important for this group.
Some disabled children never receive
dental checkups and later on require
hospital treatment for tooth decay.
Prevention of dental conditions can
save unnecessary pain, anxiety and
expensive hospital treatment later on.
Community dental services provide
treatment for people who may not
otherwise receive dental care, such
as disabled children, individuals with
learning disabilities, mental health
needs or other conditions which may
prevent them from visiting a local
dental practice. Very often parents are
not told about this service.
Parent information
National Autistic Society: Oral health
for children with Autism
Tips for parents on developing oral
hygiene routines and preparing them
for visits to the dentist:
www.autism.org.uk/living-with-autism
Scope: Dental care for people with
cerebral palsy:
www.scope.org.uk/help-andinformation/cerebral-palsy/dental-care
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GP practice guide: supporting disabled children and young people 17
Toilet training and
continence
Disabled children might not be ready
to start toilet training until they are
older than other children. It can take
a longer time for them to learn to use
the potty or toilet. It can be much more
challenging to toilet train a disabled
child and parents of disabled children
are more likely to need advice to help
them toilet train their child.
The NHS provides nappies and
incontinence equipment to children
who require nappies. The age at which
they are eligible can vary locally but
usually starts around the age of three
or four.
Paediatricians will check for medical
reasons if a child finds it difficult to
become toilet trained.
Health visitors, community nurses
and learning disability nurses can
give parents advice on toilet training.
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In some areas they are also be able to
prescribe continence products.
Occupational therapists can advise
on equipment to help the child be
comfortable sitting on a potty/toilet.
Clinical psychologists can give advice
on how to encourage the child to use
the toilet.
Continence services can give advice
and practical help and help with
products and equipment.
Parent Information
Contact a Family Parent Guide: Toilet
Training:
www.cafamily.org.uk/parent-guidetoilet-training
ERIC – Information and support
on childhood bedwetting, daytime
wetting, constipation and soiling to
children, young people, parents and
professionals:
www.eric.org.uk
GP practice guide: supporting disabled children and young people
Behaviour
Disabled children are more likely to
have problems with their behaviour
than typically developing children.
Some behavioural difficulties are
more likely in children with particular
medical conditions or disabilities for
example, attention deficit hyperactivity
disorder (ADHD) and autism spectrum
disorder (ASD). Children with learning,
sensory or physical disabilities may
have delayed or no speech and need
alternative ways to communicate. If
they are helped to express choices,
they are less likely to become frustrated
and may have more control over their
behaviour. Children with certain genetic
conditions may be more prone to
obsessive thoughts, anxiety, overeating,
poor sleep or self-injurious behaviour.
Any changes in behaviour may
represent a new medical problem
or psychological distress. Causes
should be considered in light of the
child’s physical wellbeing and social
circumstances and not be purely
attributed to a child’s underlying disability.
Challenging behaviour in children can
be extremely stressful and affect the
whole family’s physical and mental well
being. Research shows that providing
parents of disabled children with
strategies to help them manage
their child’s behaviour improves the
physical and mental wellbeing of the
whole family.
In some areas parenting courses are
available which can equip parents of
disabled children with strategies to help
them manage their child’s behaviour.
A range of different professionals might
need to be involved, depending on the
cause of the behaviour.
Children are usually initially referred
to the child development team
who will work closely with Child and
Adolescent Mental Health Services
(CAMHS) and community learning
disability teams.
GP practice guide: supporting disabled children and young people
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Paediatricians may offer advice on
how to deal with behaviour or refer on
to any of the other professionals on
this list.
Speech and language therapists can
offer strategies around communication
that may help to improve the child’s
interpretation of some situations.
Occupational therapists can provide
advice on practical issues for children
whose challenging behaviour may be
linked to a physical cause, either in
co-ordination or mobility.
Paediatric nurses often come
across different behaviours and have
experience of working with children
who are ill or disabled. They can
have a wide range of knowledge and
suggestions to help.
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Physiotherapists help children who
require support in the physical aspects
of their lives and who experience
limitations in their mobility which may
be at the centre of their frustration and
behaviour problems.
Clinical psychologists will look at the
child’s behaviour, assess its cause and
discuss practical strategies parents
can use.
Psychiatrists may be able to help
children whose behaviour is linked
with mental health issues.
Educational psychologists –
challenging behaviour may occur in
different settings, including nurseries or
school. Children can be referred by the
parents, health professional, nursery or
school to an educational psychologist
to look at setting up strategies to help
the child.
GP practice guide: supporting disabled children and young people
Child and Adolescent mental health
Service(CAMHS) and Learning
Disability teams are available in some
areas and specialise in meeting the
psychological and emotional needs
of children and young people with a
learning disability.
Community Learning Disabilities
Team (CLDT) help plan and arrange
care and support for people (across
the age ranges) with learning
disabilities and their carers. The team
may be made up of staff from health
and social care and can include
social workers, community nurses,
psychiatrists, psychologists and a range
of therapists. Composition of these
teams will vary between localities.
children under 5 years with a diagnosis
of autism. Early Bird Plus is aimed at
parents of children aged 4–8 who
receive a later diagnosis of autism:
www.autism.org.uk
Cerebra – a charity set up to help
improve the lives of children with brain
related conditions:
www.cerebra.org.uk
Parent information
Early Support: Information for parents:
behaviour:
www.ncb.org.uk/early-support/
resources
Contact a Family Parent Guide:
Understanding your child’s behaviour:
www.cafamily.org.uk/parent-guidebehaviour
The Challenging Behaviour Foundation:
www.challengingbehaviour.org.uk/
Parent training
National Autistic Society – Early Bird
and Early Bird Plus – a three-month
programme aimed at the parents of
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GP practice guide: supporting disabled children and young people 21
Sleep
Researchers estimate that between
40% and 80% of children with
additional needs have disordered
settling and sleep patterns. There are
sometimes medical reasons why a
child may not be able to sleep. If a
child struggles to communicate this
may hinder the establishment of
appropriate routines for settling and
staying asleep.
Disordered settling and sleeping
patterns can have a number of effects
on the child and family. For parents,
they are associated with high levels
of stress and irritability and increase
parents’ needs for other services such
as respite or short breaks. Siblings can
be affected, as well as the child. Being
sleep deprived can affect concentration
and memory, making it difficult to
function during the day.
Only a minority of families
who have a disabled child with
disordered settling and sleeping
patterns receive any help in dealing
with the problem.
Workshops to provide parents with
strategies to develop good bedtime
routines early on has proved to be
extremely beneficial. In some areas,
health visitors have been trained to
provide a one-to-one sleep counselling
service to parents of disabled children.
Melatonin treatment may be initiated by
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a specialist and then prescribed by GPs
under local shared care arrangements
to help with sleep difficulties for children
who do not respond to behavioural
approaches on their own.
Paediatricians will be able to decide
whether further investigations are
required and may signpost on for
additional support.
Health visitors may be able to help
parents to develop and establish a
bedtime routine.
Occupational therapists can advise
on sensory issues. They may suggest
for example that a child would benefit
from a weighted blanket.
Weighted blankets can help children
with sensory issues feel calmer and
safer at bedtime.
GP practice guide: supporting disabled children and young people
Physiotherapists can assess whether
there are any physical issues that may
be interfering with the child’s sleep.
Parent information
Early Support: Information for parents:
Sleep
http://www.ncb.org.uk/early-support/
resources
Sleep services and practitioner
training
Cerebra Sleep service has a team
of sleep practitioners who can offer
help and advice on overcoming sleep
problems:
www.cerebra.org.uk
Contact a Family Parent Guide: Helping
your child's sleep
www.cafamily.org.uk/parent-guide-sleep
The Children’s Sleep Charity offers a
number of different training packages
around sleep and train both parents
and professionals:
www.thechildrenssleepcharity.org.uk
Research Autism :Research
Study:Encouraging good sleep in
children with learning disabilities:
www.researchautism.net
Sleep Scotland provides training to
professionals in England wanting to
develop a sleep service:
www.sleepscotland.org/index.php
GP practice guide: supporting disabled children and young people
23
23
About Contact a Family
Contact a Family is a UK charity that
provides vital support and information
to families with disabled children
whatever the condition or disability.
GP practices can signpost families of
disabled children to our freephone
helpline on 0808 808 3555 for
support on a wide range of topics.
Through a national helpline and family
support service, we provide advice on
any aspect of raising a disabled child,
including help with finances, education
and getting the right support for
children and families.
We manage the Annette Chumley
library which holds a range of
information, reports and resources
relevant to disabled children, their
carers and the professionals who
support them.
How Contact a Family
can help GPs
You can send the library and
information team an enquiry
Email: [email protected]
Our medical directory: See
www.cafamily.org.uk – provides
reliable information on many medical
conditions, including rare syndromes,
and also provides details of UK
condition support groups
This guide was written by Sheila
Davies of Contact a Family.
Our guide ‘Making GP practices more
welcoming' explains how GPs can
make their practices more friendly and
accessible to families of disabled children
We provide parent guides on a range
of topics, including ‘Concerned about
your child’ which explains the role of
the different health professionals and
how they support disabled children.
24
Thank you to the following for advice
on content:
Ella Baines, GP and parent of a
disabled child
Janice Allister, Clinical Champion for
Child Health, RCGP
The British Academy of Childhood
Disabilities
http://www.bacdis.org.uk/
Carrie Britton, National Network of
Parent Carer Forums
www.nnpcf.org.uk
GP practice guide: supporting disabled children and young people
24
Local contacts
Child Development team
Name Tel
Address
Email
Child and Adolescent Mental Health Service (CAMHS)
Name Tel
Address
Email
Community dentist
Name Tel
Address
Email
Continence service (children)
Name Tel
Address
Email
Learning Disabilities Team (children)
Name Tel
Address
Email
25
GP practice guide: supporting disabled children and young people
25
Local contacts
Nurses/health visitors/community nurses
Name Tel
Address
Email
Name Tel
Address
Email
Name Tel
Address
Email
Name Tel
Address
Email
Occupational Therapy (children)
Name Tel
Address
Email
Physiotherapy (children)
Name Tel
Address
Email
GP practice guide: supporting disabled children and young people
22 26
26 GP practice guide: supporting disabled children and young people
Local contacts
Speech and Language Therapy (children)
Name Tel
Address
Email
Wheelchair & Equipment services (children)
Name Tel
Address
Email
Other local support organisations
Name Tel
Address
Email
Name Tel
Address
Email
Name Tel
Address
Email
Name Tel
Address
Email
27
GP practice guide: supporting disabled children and young people 23
GP practice guide: supporting disabled children and young people 27
Getting in contact
with us
Other information
booklets available
Free helpline for parents and families
Contact a Family provides guides for
parents of disabled children on a
range of topics.
0808 808 3555
Open Mon–Fri, 9.30am–5pm
Access to over 170 languages
www.cafamily.org.uk
www.makingcontact.org
Contact a Family Head Office:
209–211 City Road, London EC1V 1JN
Tel 020 7608 8700
Fax 020 7608 8701
Email [email protected]
Web www.cafamily.org.uk
The following guides might be
of particular interest to health
professionals. Most have been
translated into six community
languages:
• Concerned about your child
• Helping your child's sleep
• Toilet Training
• Feeding and eating
• Understanding your child's
behaviour (English only)
This publication is supported by the
Royal College of Paediatrics and
Child Health.
Registered Office: 209–211 City Road,
London EC1V 1JN
Registered Charity Number: 284912
Charity registered in Scotland No. SC039169
Company limited by guarantee
Registered in England and Wales No. 1633333
VAT Registration No. GB 749 3846 82
© Contact a Family, January 2013
28Incorporating The Lady Hoare Trust
® Contact a Family is a registered trade mark
Although great care has been taken in the
compilation and preparation of this guide to
ensure accuracy, Contact a Family cannot take any
responsibility for any errors or omissions.